Nina Herrmann is chaplain at the Rehabilitation Institute of Chicago.
This article appeared in the Christian Century December 12, 1979, p. 1237. Copyright by the Christian Century Foundation and used by permission. Current articles and subscription information can be found at www.christiancentury.org. This material was prepared for Religion Online by Ted & Winnie Brock.
If one goes out into the world of the disabled, one will soon discover that, as always, there is only one world – that of the able-bodied. As Christians we are not asked to play God and decide about another person’s quality of life. We are asked only to love God and our neighbor, to be God’s agents on earth, not by taking away hope but by giving it.<
And they came, bringing to him a paralytic carried by four men. And when they could not get near him because of the crowd, they removed the roof above him; and when they had made an opening, they let down the pallet on which the paralytic lay [Mark 2:3-4].
Except for Easter Sunday, perhaps, it’s not the press of overflowing crowds at the church door that keeps paralytics from getting inside. Today the Scripture might read: “And when they could not get near him because of the steps . . .”
In considering the role of congregations in relating to people with physical disabilities, and more specifically, people who need wheelchairs to get about, the key word to remember is “people.” So let me begin by telling you about one person who has been a patient at the Rehabilitation Institute of Chicago; her story may help us understand how we can help her and others like her.
Angela is 25 and is quadraplegic. Usually, if we see someone navigating a wheelchair on the sidewalks of our cities or towns, that someone is paraplegic, which means that the person is paralyzed from the waist down. Such a person has arm and hand movement and therefore can propel his or her own wheelchair along the sidewalks -- until reaching a high curb or pedestrian island.
People who are quadraplegic are rarely seen wheeling along sidewalks; they are paralyzed from the neck down, and most cannot operate a manual wheelchair with ease. There are more people like Angela every year. Not many years ago, most people who suffered accidents and injuries that could leave them quadraplegic did not survive. They broke their necks, and before they could reach a hospital they died.
But now paramedics are highly trained. A person who has sustained possible spinal cord injury in an automobile accident, for example, seldom is haphazardly placed on a stretcher and rushed to the nearest hospital; instead, he or she is carefully placed on a special mattress and helicoptered, if need be, to a regional spinal cord center where a team of orthopedic surgeons and neurosurgeons and other specially trained staff provide immediate lifesaving help.
Angela has been quadraplegic since she was injured in a diving accident almost ten years ago. In lay language, she broke her neck at the fifth cervical level. She is, in medicalese, a “C-5-quad” Her injury is permanent but not as bad as that of a “C-1” or “C-2” -- who is a “complete quad” and who may be barely living following an injury. As far as medical science can determine at this point, Angela probably will never walk or have complete arm and hand movement again.
She does have some arm movement -- called “gross” arm movement -- as do most people who are quadraplegic; they may even have some hand movement as well. The further away from “1” the number designation of the cervical injury, the better chance a person has of regaining more arm and hand movement. A “C-6-quad” has a better chance than a “C-4-quad,” for example.
Angela has enough gross arm movement to work an electric wheelchair. (For those who don’t, there are wheelchairs controlled by breath.) She wouldn’t be a star student in wheelchair driver’s ed, but she gets better with practice. However, when she wasn’t a patient at Rehab, she didn’t have much room to practice. She lived in a basement apartment with her father, and it’s not “handy” to tool up and down the steps in her electric wheelchair.
Angela is as beautiful as any high-fashion model. She has long lustrous black hair, a slender body, huge blue eyes and milk-white skin. She could have been a high school cheerleader, a fraternity princess, a serious ballet student. But, of course, she wasn’t. She has never had a date. And, sadly, Angela doesn’t ever expect to have a date.
I went to the beach the other day. My sister took me to the beach. The first time . . . in my wheelchair. It was warm and the sun felt good. I didn’t wear a bathing suit, of course. But then I began to watch all the other people running and playing and swimming. People my age. And suddenly I felt like a freak. I didn’t belong there. I was fooling myself. Who am I to think I can be normal, do normal things? I’m not normal. It was wrong. I shouldn’t have gone. I felt ugly and deformed -- and I am. And I started to cry and felt even worse and told my sister to take me home, where I belong.
About a year later, Angela summoned up a huge amount of courage and enrolled in a small religious college near her home. She would live on campus, and a friend who was transferring to the school would be her roommate and “attendant.”
That’s another thing you may need to know about people who are quadraplegic and about some people who are paraplegic: they need attendants. People who are quadraplegic cannot dress themselves completely or accomplish complete hygiene care; often they cannot comb their hair or brush their teeth or blow their nose -- or wipe away tears. Someone has to do these things for them. Also, there is usually no bladder or bowel control, so some people who are quadraplegic wear indwelling catheters connected to drainage bags. Others have bladder retraining programs. Bowel function also can be managed, so there rarely are any “embarrassing” moments. These are things no person who is quadraplegic likes, of course; but they are things he or she gets used to and knows how to manage, and those of us not directly involved in their personal care need not worry about them. People who are paraplegic may have the same body-function problems, but most often they can use washroom facilities -- if there is a wheelchair-accessible washroom where they are.
The attendant the person who helps a quadraplegic individual to dress and to take care of personal hygiene as needed -- is sometimes a family member, sometimes a friend, sometimes a trained employee; the latter is generally best. But it is not medically necessary that an attendant be with the quadraplegic person at every moment. This is important for all of us to remember: people who are quadraplegic or paraplegic, when otherwise healthy, are not in danger of momentarily going into a medical crisis.
So Angela, with her friend as roommate and attendant, went off to college. But unfortunately the college didn’t really know anything about quadraplegia and didn’t bother to find out. And Angela, pretty well sheltered so far in life, hadn’t developed the “worldliness” to make sure that the college got the necessary information. So when the attendant friend became overwhelmed with her commitment to Angela -- coupled with her pressured course load -- and could no longer cope, Angela had to leave college “until attendant care could be worked out.”
Rehab worked with Angela to help solve this problem. And Rehab tried to work with the small religious college also. But after encouraging Angela to leave “until the attendant problem could be worked out,” the college never answered any of Angela’s or Rehab’s letters or phone messages. It simply dumped her. It got scared of quadraplegia and it dumped her. It didn’t even have the courage to tell her so in letter or by telephone. Out of sight, out of mind. It ignored Angela as though she simply didn’t exist.
But she does. Angela is a person and she does exist. And so do thousands of other people who are quadraplegic. It will be a long time, however, before Angela tries to go to college again.
The part of me that is comfortable and happy in my job at Rehab wants to stand up on a soapbox and rail and scream and throw things at the religious people at that small religious college.
But the part of me that remembers what it was like to be new here and how uncomfortable and scared and unsure I felt when I first tried to talk with a severely disabled person in a wheelchair -- that part of me understands how the religious people at that small religious college felt. And how perhaps you and others feel who have never talked at length with or gotten to know someone who is quadraplegic or paraplegic.
I understand those feelings. But I can no longer accept them as cause for inaction. Because Angela and those like her are people just like me, their lives have forced me to ask myself some personal and scary questions. Knowing someone who is dying forces us to consider our own death. Knowing someone who is severely disabled forces us to consider the possibility of our own disablement.
For a long time after I came to Rehab I felt I’d rather be dead than be quadraplegic -- a hard thing to admit. To be the only chaplain in a 170-bed hospital filled with a great number of people who are quadraplegic; to try to help these people rediscover and/or redefine a life value and quality that they often feel has been lost; to grow to care greatly about these people; to do all these things and yet deep, deep inside, to feel that you would rather be dead than be quadraplegic -- that’s hard to admit.
But I admit it. I admit it because there are probably many other people -- ministers included -- who may feel the same way. And I admit it because once having done so, first to myself, I was forced to look at why I felt that way. In doing that, I learned something not only about myself but about disability and about the whole issue popular in Christian and medical ethics these days called “quality of life.”
In the medical/ethical area, the most popular quality-of-life issues for laypeople are those surrounding death and dying. We read about the right to die, the right to discontinue life-prolonging mechanical equipment and questionably effective medications and therapies, living wills, passive and even active euthanasia. The term “quality of life” is freely sprinkled throughout articles about death and dying.
But sooner than we might think, the term “quality of life” will be cropping up in popular medical/ethical articles about people who are not dying but who have either been born with severe physical birth defects or have sustained severely debilitating injuries, such as quadraplegia. We must ask, then, concerning “quality of life” for such persons: Living for what? To do what? To be what?
A person suffering a quadraplegia-producing injury first stays for several weeks in an acute-care hospital. Usually he or she undergoes fusion surgery to stabilize the spine -- surgery after which the patient is likely to believe, despite surgeon’s counsel to the opposite, that he or she will get up and walk. But that is not the case.
Then the person is transferred to Rehab or another rehabilitation center, from which he or she probably still believes, despite physician’s counsel to the opposite, that it will be possible to walk away. But that doesn’t happen either. The person doesn’t walk away -- despite hard work, despite prayers for a miracle and bargaining with God, despite making vast improvements in learning daily living skills from a wheelchair, and even despite, at times, some measurable return of arm and hand function. (This is not true of all people with high-level spinal cord injuries. Some whose spinal cords were not completely severed, some whose spinal cords were perhaps bruised but not cut, do regain ability to walk, But they are very, very few.)
The realization that one will not walk again is a terribly hard thing to come to terms with -- not to accept, but to come to terms with so that one can go on living. But people who are quadraplegic usually do come to terms with their disabilities and do go on living despite their extreme physical limitations.
A current and popular Broadway play called Whose Life Is It Anyway? is about a sculptor who became quadraplegic in an accident, and about his battle to have his life-sustaining catheter removed so that he can die. The play does make a point about self-determination. But its story line is not what generally happens in real life, surprising as that was to me for a long time. It’s not what really happens with the many people I know who are quadraplegic. These people do go on living -- actually fight to go on living.
And for what? I asked myself this question for a long time. What makes life worth living for a quadraplegic person? Despite acute-care and rehab hospitalization, despite some improvement and learned skills, this person still cannot dress independently, eat without help, completely control bodily functions or have sex in any of the 101 ways (though there are ways). And likely the person cannot maneuver into his or her own parish church anymore.
Wouldn’t someone in this situation really be better off dead? Why more often than not does the person who is quadraplegic fight to go on living?
Such a person fights, I believe, not because death is more fearsome than this type of life, but because he or she still has hope. Hope to walk again? Yes. Despite the odds, no quadraplegic person I know has ever totally given up hope of someday walking again. Hope for a medical breakthrough, hope for an act of God” -- hope somewhere deep down inside, hope that does not quit.
But the hope that makes a person who is quadraplegic go on living -- fight to go on living -- is more than hope to walk again one day. More so, it is hope in life, hope that sometime -- today, tomorrow, next year -- life will be better. Many people who are quadraplegic work hard to make that hope come true. They work hard to add breadth and dimension to their lives, to grow and to learn, to give and to experience. In that, they are like you and me. For all persons, hope is the food of our tomorrows, the “anchor of the soul,” and when we lose hope, we lose life -- whether we are disabled or not.
And so there is a danger when those of us who are not quadraplegic assume that those who are would be better off dead: we may rob someone of that intangible human quality of hope which does not die when one’s spinal cord is severed. Hope dies only when one’s tomorrows are cut off. And that can happen to anyone.
Yes, people who are quadraplegic have physical limitations. But all of us have limitations that can keep us from doing a number of things we may want to do. And I don’t want you to assess my limitations, letting them serve as the sole criterion by which to determine the potential value of my life. I want to be free to work within and despite my own limitations to try to reach my own goals and determine my own life value.
And so does the person who is quadraplegic.
But if you and I decide that the quality of life of a quadraplegic does not make life worth living, then we in essence contribute to taking away that person’s hope -- because we don’t do anything that may be in our power to give that person some equal chances at tomorrow. We condemn the severely disabled through acts not of commission but of omission: lack of accessible housing, accessible transportation, accessible streets and sidewalks, accessible education and employment opportunities, accessible churches.
It is easier and less fearsome to hide behind our predetermined definitions of quality of life than it is actually to come face to face with someone who is quadraplegic -- at our jobs, in our schools, our neighborhoods, our restaurants, our leisure activities, our worship. And so, we often shake our heads and do nothing, thinking, “Wouldn’t that person really be better off dead?”
That’s the easier road. But it’s a dangerous one, for by taking it we are involved in playing God with someone else’s life. Only a person who is quadraplegic can decide whether he or she would be better off dead. The lead character in the play Whose Life Is It Anyway? decides that life is not worth living. But most real people I know who are quadraplegic have not made that decision. For the moment, at least, they are battling to go on living.
Even Angela. It took her six months to get over her abortive college experience. She still hasn’t actually gotten over it, but she is growing beyond it. She had a chance to move away from her father’s basement home and into an apartment with a friend. Both young women are about the same age, and it is a natural thing for them to share an apartment, like thousands of other young women. But Angela needs attendant care, which, previously, her father and other relatives had been performing. Now out on her own, she needs a paid attendant.
The state disability agency, however, didn’t want to help fund this supplemental care. “Stay home with your father,” she was told. But a 25-year-old woman should be able to choose whether or not she wants to stay home with her father. Few 25-year-old women choose to do this when they have a chance to be on their own. “If you need care,” she was told, go to a nursing home if you don’t want to stay at home. That’s what nursing homes are for.” (Ironically, it would cost the state more to maintain Angela in a nursing home than to contribute toward her supplemental attendant care.)
Angela didn’t take this sitting still. She challenged the state’s decision -- and eventually won; at least temporarily. The state fought her, however, and she may have to attend more unpleasant hearings to assert her rights. But she is going on fighting to live. She no longer is “going home, where I belong.” She is out in the world, where she belongs, fighting to live, fighting for a chance that her tomorrows will be better.
It’s easy to be angry with the state, with the government red tape -- which is a big problem for countless people who are quadraplegic. It’s easy for us to sit back and get angry with “the government.” But immediately following the “judge not” verses in Matthew 7 is the verse about beams and moats -- or specks and logs -- and eyes. “Why do you see the speck that is in your brother’s eye, but do not notice the log that is in your own eye?”
What are you doing and what am I doing that is within our power to give Angela and others like her a chance at a better quality of life?
Perhaps we’re not the government -- or are we?
And what about our own backyards, our churches? “We’d ramp the church, but no one in a wheelchair ever comes, and it’s so expensive.” How many of us are brave enough to go into a strange church when the door is closed? We’re afraid we’ll make a commotion and everyone will turn and look. To a person in a wheelchair, an unramped church is like a church with a closed door. Save your roof! Build a ramp!
Beyond building ramps and making washrooms accessible, there is more we can do. We can have courage, say a prayer and go out into the world of the disabled. It’s not easy to talk for the first time with someone in a wheelchair. It forces us to contemplate the possibility of our own physical disability. But it is just that consideration that can make it easier. The person in a wheelchair is a person, just like you and me. If the situation were reversed, what would you want someone to say to you? The same thing any of us wants anyone to say in situations when we are the stranger: to offer a friendly greeting, carry on a casual conversation, and give a feeling of being welcome, of being wanted, of belonging in this earthly society.
The person in a wheelchair isn’t going to shatter at your slightest breath. Apart from the disability, this person is probably as healthy as you or I. He or she has likes and dislikes, highs and lows, opinions and questions, just as we do. And he or she wants to belong, just as we do.
Take courage, say a prayer, and go out -- with hope -- into the world of the disabled. Reach out to bring people in wheelchairs into church if they want to come; share transportation van services with other churches~ have some programs geared to all people, including the disabled; let no churches be built or remodeled that are not wheelchair-accessible. Go out into the world of the disabled; you’ll soon discover that, as always, there is only one world.
As Christians we are not asked to play God and decide about another person’s quality of life. We are asked only to love God and our neighbor, to be God’s agents on earth, not by taking away hope but by giving it. “The thief comes only to steal and kill and destroy; I came that they may have life, and have it abundantly” (John 10:10).
Would the “certain man” who was left half-dead by robbers en route from Jerusalem to Jericho have been better off simply dead? Perhaps the priest and the Levite thought so. It was easier and less threatening -- and less expensive -- to pass by on the other side.
But the Samaritan thought differently. He came face to face with a half-dead stranger and he acted on hope. The man was saved because the Samaritan acted on hope.
People who are quadraplegic usually are not seen navigating the sidewalks of our cities and towns in their wheelchairs, so it is still relatively easy to avoid coming face to face with one of “them.” We must therefore make a concerted effort to cross over to them -- and to act on hope.
“Which of these three, do you think, proved neighbor to the man who fell among the robbers?” He said, “The one who showed mercy on him.” And Jesus said to him, “Go and do likewise” [Luke 10:36-37].